For Granted

When you have special needs children , you don't take things for granted the same way other people might. I don't assume my kids will walk and talk on time. It's always a huge relief when they do. I watch all the kids move through their developmental milestones and I check them off my list. Like a constant imaginary check list only I can see.
eye contact ...ehhh check
play skills .. yup check
responds to name... check
points... CHECK!
I still watch with an over critical eye. Nate has some weird things he likes to do. I worry I am missing something. he will screech for no reason and then go back to playing. He will verbally stim on silly words and get stuck on other words or sounds and just repeat them. I find him lining up stuff and he can be so very rigid in his thinking. He has sensory issues and hates socks just like Sammy too.

It could be personality. He is a headstrong little guy. He is too social for me to really worry. He warms up slowly but once he is comfortable - watch out! I am so scared I am going to miss something. How much is just what he has learned from Sammy? How much is just adaptive behavior to deal with the chaos that Sammy brings to our house? How much is an issue?

What if I miss it again?

I watch Grace and I go through the same list. What if I am wrong? Again.

The upswing to this is that every single milestone seems so huge. I am aware and focused on them. I enjoy watching the children work to acquire the new skills. It's like every day is Christmas here. I don't know if I would ever have thought this way without Sammy and his issues. How can someone feel so happy and so sad at the same time? Nothing in life is ever just sweet anymore though. There is always a bitter edge to any accomplishment.

I have been watching Nate slowly pass Sammy and that is getting difficult. Sammy can see some of it and he is frustrated too. Sam works so hard, it's just easier for Nate. What is going to happen when Grace passes Sammy too?

Until we get there I won't worry too much. I will just try to relax and enjoy where we are. I don't assume tomorrow brings anything, but I am always hopeful.

Loosing Ground

Sammy's school called home, to be more exact, his principle called. He has been refusing to work at school, he has been refusing to work at home. He seems sad all the time. I have had a really hard time connecting with him like I normally do.

Sammy also threatened to kill himself at school. She said that since Christmas break he hasn't been himself.  He hasn't been able to connect on any level lately. The dog seems to be helping be more joyful at home and seems to be helping him connect to the dog, but not to anyone or anything else. I am at a loss. I don't really know how to help him.

The only thing I can think of is that the death of his "buddy" next door has really wounded him. I knew he was sad but I didn't know it was this bad. He is overwhelmed  with his school work.

He is good at math. He knows his math facts, he can do them pretty quickly. They just started 2 digit addition and he freaks out every time he sees the papers. They are now trying to give him one problem at a time on a white board thinking it may be a figure ground issue. I just hope we figure out something that works for him.

I miss happy Sammy. I miss his smile. Please Lord, help us find a way back to the sunshine.

a Day Off

Sammy hates school. There is no doubt in my mind that he struggles with it. Learning is hard for him, I know this. Here is the issue however. He is awesome once he gets to school, every day. The teachers all say he never has behaviors (except for a few very isolated incidents) he never acts fresh and he never yells or screams. He doesn't stim and he is 100% appropriate in school. This creates a 2 fold problem

1. I feel like crap because he is horrible at home. He is disrespectful and he screams at me. He yells and cries over homework and acts like a total beast! He spends a lot of time stimming on things like the blinds in the bathroom. He refuses to get dressed in the morning.He refuses to eat breakfast some days.He tells me he hates me and that I am the worst mom ever. He called me a freak show..where he got that I have no idea.

2. They don't see how hard it is for him  ...I cant just go tell them it's hard for him. He is fine in school, they wont believe me. I really wonder if they think I am just crazy and making it all up. I know that is probably my insecurity... after things being so tough in our last school I am really afraid to rock the boat too much. He get's lots of help and his team here is WONDERFUL. Mrs. L and Ms G. are incredible people. the principle is fantastic as is the nurse the OT and the ST. I love them and they love Sammy. We are blessed with an incredible team. Even the best team however can't make it not hard for Sammy. He cries every morning begging me to just let him stay home. I totally would if he wouldn't be beating up his little brother 5 minutes after the bus left.

Much like every day he cried and sobbed that school is too hard and his teacher is stupid and he hates school. Can he please just stay home just today? He will go to school tomorrow he promises.... oh how I wish I could just say yes.

Focus and Determination

                                                        
 Katie was laid to rest this week. A painful but powerful process began as 700+ people came out to pay their respects to an amazing woman. I knew her through our parish family of St. Mary's. I still sing there once a month even though I am currently a parishioner at SFX. Katie always sat in front of the piano and was always smiling.  I know her mother Karen, and she is a wonderful sunshine filled person. This week was particularly hard to take for so many reason.
   This community was ravaged by this horrific accident in our town. One woman is dead, her companion seriously injured, and another woman's life changed forever and an entire family heartbroken. Our town will never be the same again I am sure of that.
   Charlie Murphy spoke so eloquently at her funeral, not a single dry eye in the packed house. I had always known Katie as a happy gentle girl. What I didn't know ,until Charlie spoke , was how powerful that woman was.   I didn't know that her parents were told to abort her 29 years ago, that they chose life and they were given an amazing gift. Katie truly was one in a million. She fought for the rights of all differently-abled people everywhere, she spoke in front of crowds that would make you and me pee our pants. She was persistent and tough and apparently also a bit ornery at times. She was a woman with a mission, a purpose, a faith, and a direction. She worked hard, and even when she couldn't find a job she would do whatever it took because "she had responsibilities and needed to get paid". Some people will do whatever they can to not have to work, but not Katie. She worked hard.  I sat in the church silently. I looked around at how very connected Katie was. She knew everyone and everyone loved her.
   I sat there and listened quietly thinking about the impact she had on our world, and wondering if Sammy would ever be capable of that kind of fire.  I kept thinking about Katie's impact on the world and comparing it to Sammy's. Sammy isn't your sunshine and lollipop kind of kid. He is the child that eats whole bags of lollipops in mere minutes. He is so volatile and forceful. However after hearing Katie's friends and family speak this week I am more convinced than ever that Sammy will do great things.
   Katie gives me Hope, huge pie in the sky hope. The kind of hope that makes me want to get up in the morning, and helps me to breath when Sammy flipped about his pants. I listened closely to the stories her friends and family told and I thought... "there is hope for Sammy". I saw differently abled friends get up and speak and  I watched their parents stand beside them. I watched one mans father help him through probably the hardest speech of his life, and a mother reminding her son about boundaries as he spoke. I saw these people with amazing gifts and strengths and heart. I saw people who wore their hearts on their sleeves and felt every feeling like a flag above a castle. Something I have difficulty with.  All of it, every moment gave me unbridled hope for Sammy.
   This is an incredibly sad and difficult time for her family and close friends and there is nothing I can say or do to change that for anyone. I just want you (yes you) to know that through this I have garnered a ray of sunshine and it gets me through the day.
   Thank you Katie for all you have done and for everything your memory will continue to do.
A walk is being organised in Katie's honor check out the face book page HERE you know you want to. Let them know YLMB sent ya

Finding the Rhyme

    I have been quiet here lately and for that I apologize.
 
    I have been struggling here with so many things. The death of a young woman with developmental disabilities  after a hit and run accent has rocked our town. The young woman Katie, was extraordinary in so many ways. Always happy and smiling and helpful. She went to our church, helped in some of the ministries and was faithful and unshakable in her faith.

    Her mother was also an incredible woman, one of the first people I spoke with after Sammy was diagnosed. Karen was just a few feet away as I lost it in the grocery store trying to figure all of this out and becoming overwhelmed to the point of tears. She spoke softly and assured me it would be ok. It made a world of difference to me that night, She gave me hope, as did Katie in her sheer awesomeness. My mother knows her as well, she is just one of those people you have to love. At least that is how I see it. I don't know if she is even aware of the impact she and Katie had on me. The hope and strength they both gave me and how grateful I am for that.

    This tragedy has rocked our little town. Everyone here knew Katie, she was just a ray of sunshine to everyone she came near. It has rocked me in so many different ways.

    I keep thinking about Karen, and how much this must hurt for her. She loves her daughter so much. Having a daughter of my own now gives me a different perspective. It's painful to think about. In fact it makes me ill to think about it. I can't wrap my head around the anguish and pain that poor woman must feel.

    I keep thinking about Katie. I cant imagine life was easy, but I don't think I ever once saw her not smiling. Really, not one time! I think about all the amazing things she was doing with her life, her time, her energy. I am not even half as productive.

    I keep thinking about Sammy and his adulthood, about his frailty and strength. I think about Sammy and his naivety, his anger,his fortitude. I think about Sammy and all he is to me and how his future is so cloudy. I have no idea what I think really it just overwhelms me with deep sadness and confusion. I may make sense of this someday. I highly doubt that, but I may try. If I figure out I will be back to let you know. I promise. If nothing else but to record it, make it permanent and static.

   until then ...

Sleep sweet miss Katie